For Rich, And Anyone Else Who Feels Frustrated

Post by **tex** » Sat Nov 13, 2010 1:57 pm

Rich,

We have to keep in mind that gaining control over this disease, and getting our life back, is one of the most difficult "battles" that most of us will ever have to fight, during our lifetimes. We didn't choose to initiate this "fight" - it chose us, and we have no choice but to accept it, and to do whatever is necessary, in order to win. Defeat is not an option, because that would resign us to spend the rest of our life in misery. But more importantly, we have to win in order to escape the overbearing stress that comes with loss of control over the rest of our life. That type of stress is life-altering, and will almost surely bring on additional autoimmune diseases.

We all want the battle to be over quickly, so that we can get on with our lives, but that's just not going to happen - this disease will fight us tooth and nail, every time we drop our guard, for not just months, but years, for most of us, until we finally prove to it that we are in control, because we have perfected our personal treatment program. We have to, in effect, wear it down, or it will wear us down.

The disease can affect every organ in our body, and it tends to cause us to doubt the effectiveness of our treatment program, and our understanding of the disease. It's frustrating, and it's depressing, and it tries to destroy our hopes, by flooding us with symptoms. It seems to love to "kick us while we're down", and it's self-perpetuating, (MC causes extreme stress, and stress makes the symptoms of MC even worse). It does everything it can, to try to destroy our faith, and our hope, but we have to hang onto those concepts at all costs, because when things really get tough, they may be our best defense. We even begin to look for other diseases to blame some of our symptoms on, but in the end, when we get our MC symptoms under control, all the other "diseases" usually disappear.

There is no right or wrong way to treat the disease, as Gabes frequently points out - there is only your way, meaning that you have to continue to fine-tune your treatment program, to meet your own needs, until it works, and you're comfortable with it. The disease is extremely insidious, in that we can be only one day away from remission, and yet we would never know it, from the severity of our symptoms. We have to survive the tough days, one day at a time, and aggressively pursue our treatment program, and improve it, whenever we see the need. Mostly, though, we have to wear the disease down, and not let it wear us down, because we're in this fight for the long haul.

There is no question that all this effort is worth it, though, because the quality of the rest of our life is at stake.

Tex

Joefnh · Post by **Joefnh** » Sat Nov 13, 2010 2:09 pm

Well said Tex

--Joe

natythingycolbery · Post by **natythingycolbery** » Sat Nov 13, 2010 2:33 pm

Thanks Tex, This is exactly what I needed to read at this moment in time :)

Post by **Rosie** » Sat Nov 13, 2010 2:40 pm

Thanks, Tex for the inspiring "pep talk"!!

Rosie

GRB · Post by **GRB** » Sat Nov 13, 2010 2:44 pm

Thanks Tex for the dose of reality and the accompanying encouragement.

hoosier1 · Post by **hoosier1** » Sat Nov 13, 2010 3:06 pm

Tex,

Can't say I disagree with anything you have written. My intuition tells me you are correct, but I am letting my emotional side get the best of me. And that seems easy to do when you feel sick and tired, as you, and everyone on this board knows.

I do appreciate your pep talk. In the past, I would have suffered in silence. Those days were much darker.

So here's to pulling myself up by my bootstraps, once again.

You're a good man, Tex. I sensed that the first time I read one of your posts.

Rich

Kari · Post by **Kari** » Sat Nov 13, 2010 4:51 pm

Tex - you're simply AWESOME - thanks for being here!!!!!

Love,
Kari

ant · Post by **ant** » Sat Nov 13, 2010 10:44 pm

Dear Tex

It really helps to reads your words. Thank you!!

Best, ant

Gabes-Apg · Post by **Gabes-Apg** » Sat Nov 13, 2010 11:37 pm

Tex
firstly that was a wonderful heartfelt message,
Secondly Like Naty it was what i needed to hear today
and thank you for the reminder of my own words re managing MC, there is no right way or wrong way, there is my way.....

thanks to everyone in this family for your support

Gloria · Post by **Gloria** » Sun Nov 14, 2010 12:29 am

Well written, Tex, and I agree totally. There's nothing better than finally managing this disease, rather than having it manage us. It can take a long, long time and a great deal of effort and detective work, but in the end, it's worth it.

Gloria

MaggieRedwings · Post by **MaggieRedwings** » Mon Nov 15, 2010 7:11 am

Tex - You are the best.

How did you know that I needed to read something like that this morning? It did me much good and as always, you have the best way with words and the calmest way of doing it.

Love, Maggie

Kari · Post by **Kari** » Wed Nov 17, 2010 7:00 pm

Tex,

Thanks again for all the care you're taking to be here for everyone who needs you. You're a true "ROCK" - can't imagine how you're able to do this, while still dealing with your own problems. Today I'm probably suffering the biggest setback since going gluten free in July (multiple firehose D), and I soooo needed to read your very thoughtful note on coping with MC. I've printed it and placed it on my refrigerator as a constant reminder.

Love,
Kari

Joefnh · Post by **Joefnh** » Wed Nov 17, 2010 7:10 pm

Tex I just wanted to say thanks for all of your help and incredible expertise on this site. I have been having a bad week and have come back to your post here a couple of times for a bit of sanity and perspective.

Thanks again Tex

--Joe

hoosier1 · Post by **hoosier1** » Wed Nov 17, 2010 7:42 pm

Joe, I feel like I started a thread that is causing everyone to slide. Was not my intention.

Are you having an abnormally stressful week or is it just the normal ups and downs you have?

Kari, I feel for you too. What is going on with all of us lately?

I am still struggling too. I am seriously considering throwing prednisone at my problem for a while.

Will talk to my family doc on Tuesday about this.

Rich

Joefnh · Post by **Joefnh** » Wed Nov 17, 2010 7:56 pm

Hi Rich. For me this started with getting 'soyed' (I think) last weekend and since then I have been having a painful run with some D. I felt good the day after but went downhill after that. I am down to eating boiled chicken and white rice which does seem to be helping. Couple this with very stressful days at work and its been a long week.

I know for me over the last years the autumn has always been the time when my aches and pains always flared up. It would not surprise me if that's affecting things as well.

I think the take away is a renewed (again

) sense of how important the diet is in treating these diseases and how stress affects our health.

I hope you don't have to take prednisone, but can certainly understand the frustration. I believe that the mechanisms of MC can also affect the small bowel and stomach as well, so if you are affected in those areas as sell the Entocort would not be that effective.

--Joe